Positively Trans Needs Assessment: Reports 1-3

First Round of Research Findings, March 2016.

In 2015, Transgender Law Center launched Positively Trans as a project focused on to develop self-empowerment and advocacy by and for transgender people living with HIV. Positively Trans operates under the guidance of a National Advisory Board (NAB) of transgender people living with HIV from across the United States; the NAB is primarily composed of trans women of color who are already engaged in advocacy in leadership roles in their local communities.

Recent studies indicate that transgender people, especially transgender women of color (TWOC), experience disproportionate economic marginalization, homelessness, and stigma and discrimination in healthcare access and provision; harassment and violence at school; and police abuse, as well as physical, sexual and physical violence. In the face of these systemic threats and barriers to autonomy and wellbeing, the impact of HIV on the transgender community cannot simply be addressed by programs that work to affect individual behaviors; we must address the systemic barriers our community members face face—and the complex interactions of these systems—to reduce HIV risk and increase access to care and other resources for trans people living with HIV (TPLHIV). We believe that effective HIV responses for transgender people must include a combination of leadership development, community mobilization and strengthening, access to quality health care and services, and policy and legal advocacy aimed to advance the human rights of the community. Furthermore, we believe that an effective HIV response for trans people must center the leadership, voices, and experience of TPLHIV particularly trans women of color.

In order to identify community needs and advocacy priorities, we conducted a needs assessment in the summer of 2015. The needs assessment was released online and made available across the U.S. Key questions focused on barriers to health and well-being for transgender people living with HIV and on their legal and health priorities. This report describes the responses to a small subset of those questions. We made the survey available online in English and Spanish; 80% of complete responses came from the English language instrument and the remaining 20% came from the Spanish language instrument. Recruitment took place through existing networks of transgender people and people living with HIV, and through clinics serving transgender people living with HIV. Responses were limited to people living with HIV in the U.S. whose sex at birth is different from their current gender identity. The project was reviewed and given exempt status by the Eastern Michigan University Institutional Review Board.

Based on responses to several items on the survey instrument, we expect that the survey mostly attracted respondents who already have access to medical care. As a result, the responses may underrepresent the experiences of those who are more isolated. Because respondents were recruited through existing networks and not randomly selected, the results cannot be interpreted as representative of all transgender people living with HIV in the U.S. Instead, these results should be understood as illustrating the experiences and priorities of transgender people living with HIV and as providing a starting point for further engagement.

More than 400 people responded at least in part to the survey, with complete responses coming from 157 respondents. The analysis we provide in this report contains data only from the set of complete responses. The majority were female-identified U.S. citizens making less than $23,000 per year. More than 40% had been incarcerated in their lifetime and 42% currently live in the South. The median length of time since identifying as transgender/gender non-conforming was 5 years greater than the median length of time living with HIV, suggesting that transgender and gender non-conforming people face unique risk and vulnerability to the HIV/AIDS epidemic. Our full report contains a summary of demographic information for respondents who submitted complete surveys. Descriptive statistics of respondent demographics suggest that the survey oversampled whites and undersampled young people and people living in the Northeast.

This initial report focuses on findings related to two key areas: advocacy priorities and barriers to health care. Subsequent reports will include findings on stigma, violence, substance abuse, law enforcement interaction, identity documents, and priorities for youth and elders.

Advocacy Priorities

Creating gender affirming and non-discriminatory healthcare facilities and addressing HIV-related discrimination were the top health and legal priorities for respondents. Many respondents expressed concerns about hormone replacement and antiretroviral therapies and their side effects for transgender people. Ensuring support for mental health and recovery from trauma and for personal (self) care were selected as top critical priorities for transgender people living with HIV.

Participants were asked to select their top five health concerns. Figure 1, above, shows the items ranked by percentage of respondents who indicated each item was among their top 5 concerns. Not listed are: dental care (35%), interaction between hormone therapy and anti-retroviral therapy (35%), complications from silicone injections (26%), pre-exposure prophylaxis and post-exposure prophylaxis (16%), substance abuse (9%), and reproductive health (8%).

Respondents overwhelmingly selected discrimination as priorities for legal advocacy work. Addressing HIV-related discrimination and discrimination in employment, public accommodations, and housing, made up four of the top five priorities. The other top five priority focused on the critical need to access gender appropriate ID documents.

Not listed in Figure 2 are: dealing with law enforcement (including addressing a past criminal record) (38%), immigration (17%), and family law (including parental rights) (14%). We hypothesize that immigration issues rank higher among Asian/Pacific Islander and Latina/o respondents; further analysis will determine this.

The concerns about discrimination were coupled with the belief of many respondents that they were not knowledgeable enough about their legal rights. Together, these two sets of responses highlight a critical need for rights-based trainings and advocacy work specifically for transgender people living with HIV.

Barriers to Health Care and Well Being

To better understand the healthcare barriers that transgender people living with HIV face, respondents were asked if they had ever gone six months or longer without medical care since their HIV diagnosis. 41% of respondents (n=65) indicated that they had.

Respondents who had been incarcerated or detained were significantly more likely to have gone without medical care for more than 6 months (51% of those detained versus 35% of those never detained, p<0.03).

The respondents who had gone without care for more than six months were asked a further question about why this happened. The most common reason respondents reported for going without healthcare for more than 6 months was previous or anticipated discrimination by a healthcare provider (29%). Other reasons included having too many other things to deal with (20%), economic barriers (health care costs, transportation) (17%), not having a health care provider (12%), and fear that someone they knew would see them (8%),

Respondents who had gone without healthcare for more than six months highlighted costs as a barrier to health coverage. All respondents were asked about health insurance and only 80% of respondents indicated that they had health coverage. The percentage of respondents with insurance coverage dropped dramatically for Hispanic and Latino/a respondents (67%) and African American respondents (75%) when compared with White respondents (94%). Differences for Latina/o and White respondents were significant at the p<0.02 level. When stratified by income, insured rates also showed expected disparity – 100% of respondents earning more than $75,000 annually reported having health insurance, while only 70% of those earning less than $12,000 did. As a group, 87% those earning more than $12,000 overall reported being insured, underscoring the particular vulnerability low-income people face in attaining health coverage as well as the increased likelihood that people of color experience extreme poverty.

Many respondents indicated the previous experience or expectation of mistreatment by providers. The distance that can occur between many transgender people living with HIV and their providers is at least partially demonstrated by the low number of respondents (9% to 17%) who indicated that they had providers who shared their experiences as transgender or gender non-conforming people. The clearest barrier to health and well-being reported in the survey was the outright denial of health services. Respondents indicated that they had been denied health care because they were transgender or gender non-conforming (31% had this experience) and because they were HIV-positive (20% had this experience). These high numbers reflect violations of respondents’ human right to health care.

White transgender people living with HIV reported higher levels of denial of care. African American and Latino/a transgender people living with HIV were more likely to express the possibility, rather than the certainty, that they had faced denial of services (Figure 7). These differences may reflect complex discrimination created by the simultaneous risks of racial and ethnic discrimination, HIV stigma, and discrimination based on gender identity or expression.

Denial of care, whether because one is transgender or gender non-conforming, because one is living with HIV, or both, has a stigmatizing effect that goes beyond the interaction itself. Transgender respondents living with HIV were significantly less likely to receive regular HIV care if they previously had been denied care because of their gender identify or HIV status.

Of those who possibly or certainly were denied healthcare because of their transgender/ gender non-conforming identity, 57% to 62% had gone six months or longer without healthcare since their HIV diagnosis (figure 8). Of those who had not faced this discrimination, only 28% had gone six months or longer without healthcare since their HIV diagnosis. Figure 8 shows the differing proportions of respondents who experienced provider discrimination and those who experienced gaps in health care of at least six months. Figure 9 shows the same breakdown for those who experienced provider discrimination based on their HIV status. Differences among each class were strongly significant (P<0.0001), which confirms anecdotal reports that transgender and gender non-conforming people will disengage from care that is disrespectful or discriminatory, while access to affirming care serves as a protective factor.

Similarly, of those who indicated they possibly or certainly were denied healthcare because of their HIV status, 53% to 82% had gone six months or longer without healthcare since their HIV diagnosis. Of those who had not faced this discrimination, 31% had gone six months or longer without healthcare since their HIV diagnosis.

In future analysis, we will consider the impact of health care discrimination on other health and quality of life outcomes the survey measured.

In addition to descriptive statistics of areas of the needs assessment not covered in this initial report, future reports will include statistical inference to determine what, if any, relationships exist between variables measuring health outcomes, stigma, experiences of violence, viral load suppression, immigration, and participation in social change activism.

The work of the National Advisory Board of the Positively Trans and the responses to the survey by transgender people living with HIV across the U.S. demonstrate immediate and critical needs to protect transgender health and access to legal rights. The following recommendations are not listed in priority order as each will be required to be put into place if ending barriers to care and access to legal rights are to be a reality for transgender people living with HIV.

The following programs and initiatives are required:

Legal and rights-based advocacy training programs designed specifically by and for transgender people living with HIV

Support systems for transgender people living with HIV who have experienced discrimination, and for those who anticipate discrimination, to be able to access care and services without fear of mistreatment

Identification and development of economic initiatives to relieve the financial barriers and stresses that limit access to care, for all transgender people living with HIV with particular attention to the needs of transgender people of color.

Second Round of Research Findings, March 2017.

In 2015, Transgender Law Center launched Positively Trans as a project focused on to develop self-empowerment and advocacy by and for transgender people living with HIV. Positively Trans operates under the guidance of a National Advisory Board (NAB) of transgender people living with HIV from across the United States; the NAB is primarily composed of trans women of color who are already engaged in advocacy in leadership roles in their local communities.

One thing we heard repeated over and over was that the myopic vision of testing and condom distribution as the sole means of addressing health among transgender people falls infuriatingly short of providing meaningful support. Focus group participants pointed to the need for comprehensive, affordable, trauma-informed, culturally competent health care and a sustainable means for meeting basic needs – food and shelter. They clearly articulated that these social determinants of health are drivers of the epidemic that conventional prevention programs don’t address. One Miami participant said, “The state thinks (HIV transmission) is solved by condoms, not by improving our lives or meeting our needs.”

Transgender and gender non-conforming people living with HIV (TPLHIV) face barriers in every aspect of life, due to family rejection and rampant discrimination in housing, health care, education, and employment. As a result, TGNC people, especially transgender women of color, find themselves cut out of the formal economy without access to safe, respectful health care, which in turn leads to a cycle of trauma from which many transgender people struggle to exit.

Transgender people face twice the rate of unemployment when compared to the general population, with trans people of color facing an unemployment rate at least four times higher. Almost half of all trans people have reported under-employment at some point in their lives. Trans people in the state of California, a state with employment nondiscrimination laws inclusive of gender identity, are twice as likely to be living below the poverty line. Nationwide, trans people are four times more likely to be living in “dire poverty,” making less than $10,000 per year. Such dire economic situations lead trans people to be disproportionately (16%) involved in underground economies, including sex work. Nearly one fifth of all transgender people have experienced homelessness, which increased their risk of violence, incarceration, HIV, and/or attempting suicide. Trans women of color were worse off in all economic measures — being more likely to experience homelessness, unemployment, and the underground economy.

Nearly 60% of trans people have reported rejection from family members, which is correlated with much higher rates of homelessness, HIV, and suicide attempts. Trans women are almost twice as likely to experience sexual violence than the general population. Over 40% of trans people have reported physical violence due to the fact that they are transgender. Transgender people of color report even higher rates of physical violence due to being transgender. Other factors, such as participation in sex work, increase the risk of interpersonal violence for transgender people, with 65% of trans women participating in sex work in Washington, DC, reporting violence from both customers and police.

While we know these heartbreaking statistics for the general transgender population, studies of transgender people living with HIV rarely go beyond transmission risk and surveillance data, hindering a holistic understanding of TPLHIV’s lives that could identify the role of violence and discrimination in creating the conditions that result in the extreme HIV prevalence rates these studies do observe – with estimates as high as 27% for transgender women overall and above 50% for African American transgender women.

Transgender Law Center launched Positively Trans as a project aimed to develop self-empowerment and advocacy by and for transgender people living with HIV. Positively Trans operates under the guidance of a National Advisory Board (NAB) of transgender people living with HIV from across the United States; the NAB is primarily composed of trans women of color who are already engaged in advocacy in leadership roles in their local communities. In order to identify community needs and advocacy priorities, we conducted a quantitative needs assessment in the summer of 2015, which was distributed online in Spanish and English. Responses were limited to adults living with HIV in the U.S. whose sex assigned at birth is different from their current gender identity. The project was reviewed and given exempt status by the Eastern Michigan University Institutional Review Board.
In the face of these systemic threats and barriers to autonomy and wellbeing, the impact of HIV on the transgender community cannot simply be addressed by programs that work to affect individual behaviors; we must address the systemic barriers our community members face—and the complex interactions of these systems—to reduce HIV risk and increase access to care and other resources for trans people living with HIV (TPLHIV). We believe that effective HIV responses for transgender people must include a combination of leadership development, community mobilization and strengthening, access to quality health care and services, and policy and legal advocacy aimed to advance the human rights of the community. Furthermore, we believe that an effective HIV response for trans people must center the leadership, voices, and experiences of TPLHIV, particularly trans women of color.
Our communities need substantive and dramatic change in the hearts and minds of people writing and enforcing public health policy, providing health care, and making hiring decisions. As one participant in the Miami focus group said, “It’s not only HIV testing, it’s not only giving out condoms. Our community needs some kind of strength. We need housing. Food. Healthcare.”

A cascade of economic effects including family rejection, discrimination and push-out in schools, and workplace discrimination, result in many TPLHIV working high-risk, low-wage jobs with increased exposure to police intervention. However, smart, compassionate public policy with strong enforcement mechanisms can make a difference if decision-makers commit to improving conditions on the ground for transgender people living with HIV.

The following programs and initiatives are required:

Medicaid expansion should be adopted in all states immediately, and Medicaid programs in all states must expand eligibility to undocumented immigrants and non-permanent residents

Hospitals, clinics, and AIDS Services Organizations (ASOs) must bring their staff and programming into compliance with Section 1557 of the Affordable Care Act, which prohibits discrimination in health settings, including discrimination based on gender identity or expression

Health care providers working with transgender people should follow informed consent and harm-reduction guidelines with administering hormone therapy, instead of punitive or restrictive approaches

All health care providers should receive training in the basics of transgender medicine, and all workers in health settings should receive cultural competence training.

Funded campaigns to educate employers about the benefits of hiring transgender employees

Given high rates of conviction and incarceration as drivers of high unemployment, employers should remove screening questions for prior convictions from job applications

Financial support for trans-led organizations, particularly service organizations, to improve health in the trans community as well as providing gainful employment

Second Round of Research Findings, March 2017.

In August 2015, Positively Trans, a project of Transgender Law Center, held focus groups with transgender women of color living with HIV in Atlanta, Georgia and Miami, Florida. The purpose of the groups was to generate information to illustrate –with real experiences and stories—the resilience, challenges, and barriers our community faces. Meant to supplement and parallel our quantitative study, the focus groups produced deep and meaningful conversations that policymakers too often ignore or simply never hear.

While discussing changes in the legal and policy environment, focus group participants brought up the shortcomings of policies that would protect transgender people in theory, but fall short in practice because of a lack of enforcement. Too often, arms of the state meant to protect civil and human rights instead become instruments of harm against our communities. The ongoing violence transgender and gender non-conforming (TGNC) people face is a result of persistent dehumanization of TGNC people, and trans people living with HIV (TPLHIV) are at heightened risk, due to family rejection and rampant discrimination in housing, health care, education, and employment. As a result, TGNC people, especially transgender women of color, find themselves cut out of the formal economy without access to safe, respectful health care, which in turn creates increased vulnerability to abuse from law enforcement and the judicial system.

Transgender people experience interpersonal violence at higher rates than the general population. Nearly one fifth of trans people living in the United States have experienced domestic violence by a family member because of the fact that they are trans. Nearly 60% of trans people have reported rejection from family members, which is correlated with much higher rates of homelessness, HIV, and suicide attempts. Trans women are almost twice as likely to experience sexual violence than the general population.10 Over 40% of trans people have reported physical violence due to the fact that they are transgender. Transgender people of color report even higher rates of physical violence due to being transgender. Other factors, such as participation in sex work, increase the risk of interpersonal violence for transgender people, with 65% of trans women participating in sex work in Washington, DC, reporting violence from both customers and police. While we know these heartbreaking statistics for the general transgender population, studies of transgender people living with HIV rarely go beyond transmission risk and surveillance data, hindering a holistic understanding of TPLHIV’s lives that could identify the role of violence and discrimination in creating the conditions that result in the extreme HIV prevalence rates these studies do observe – with estimates at high as 27% for transgender women overall and above 50% for African American transgender women.

Transgender Law Center launched Positively Trans as a project that focuses on the development of leadership, self-empowerment, and advocacy by and for transgender people living with HIV. Positively Trans operates under the guidance of a National Advisory Board (NAB) of transgender people living with HIV from across the United States; the NAB is primarily composed of trans women of color who are already engaged in advocacy and leadership roles in their local communities. In order to identify community needs and advocacy priorities, we conducted a quantitative needs assessment in the summer of 2015, which was distributed online in Spanish and English. Responses were limited to adults living with HIV in the U.S. whose sex at birth is different from their current gender identity. The project was reviewed and given exempt status by the Eastern Michigan University Institutional Review Board. In the face of these systemic threats and barriers to autonomy and wellbeing, the impact of HIV on the transgender community cannot simply be addressed by programs that work to affect individual behaviors; we must address the systemic barriers our community members face—and the complex interactions of these systems—to reduce HIV risk and increase access to care and other resources for trans people living with HIV (TPLHIV). We believe that effective HIV responses for transgender people must include a combination of leadership development, community mobilization and strengthening, access to quality health care and services, and policy and legal advocacy aimed to advance the human rights of the community. Furthermore, we believe that an effective HIV response for trans people must center the leadership, voices, and experiences of TPLHIV, particularly trans women of color.

Our communities need substantive and dramatic change in the hearts and minds of people writing and enforcing public policy. As one participant in the Atlanta focus group put it: “They have to see us as people in order to consider protecting us in a way that matters.”

In all, over 400 people attempted the survey; 80% of complete responses came from the English version, and 20% from the Spanish version. Findings below represent analysis from 157 complete, valid responses. Based on responses to several items on the survey instrument, we expect that the survey mostly attracted respondents who already have access to medical care (for example, 77% of respondents were virally suppressed). As a result, the responses may understate the experiences of those who are more isolated. Significantly, the survey did not reach respondents who are currently incarcerated; we expect that including incarcerated people in the study would shift findings dramatically. Because respondents were recruited through existing networks and not randomly selected, the results cannot be interpreted as representative of all transgender people living with HIV in the U.S. Instead, these results should be understood as illustrating the experiences and priorities of transgender people living with HIV and as providing a starting point for further engagement.

The majority of respondents were female-identified U.S. citizens making less than $23,000 per year. More than 40% had been incarcerated in their lifetime and 42% currently live in the South. The median length of time since identifying as transgender/ gender non-conforming was 5 years greater than the median length of time living with HIV, suggesting that transgender and gender non-conforming people face unique risk and vulnerability to the HIV/AIDS epidemic. Table 1 contains a summary of demographic information for respondents who submitted complete surveys. Descriptive statistics of respondent demographics suggest that the survey oversampled whites and undersampled young people and people living in the Northeast.

Transgender people living with HIV face a barrage of discrimination and violence in daily life. In order to reduce the risk and to improve the health and quality of life of TPLHIV, we must create opportunities that empower TPLHIV and support their agency to leave the abusive environment behind. We must also provide resources that enable TPLHIV to overcome these barriers.

The following programs and initiatives are required:

Pre-arrest diversion programs to connect TPLHIV with social services and job training

Economic development to support TPLHIV’s autonomy

Reform of current criminalization laws that perpetuate stigma and discrimination

Police reform to sensitize law enforcement officers on trans issues and to foster a safer environment for TPLHIV to report violence and to access victim services.

Legislation both federally and statewide to protect TPLHIV from transphobia and discrimination